He āhuatanga onge e pā ana ki te roro: Kei te mōhio koe ki te PML? (Progressive Multifocal Leukoencephalopathy - PML)

Kua rongo kē koe i tētahi mate e kiia nei ko te PML (Progressive Multifocal Leukoencephalopathy)? Kāore pea koe i te mōhio ki tēnei ingoa. Ko te take he mate tino onge te PML e pā ana ki tō tātou roro. Ko te mea ka tupu i roto i tēnei ko te whakangaro haere i ngā pūtau e whakaputa ana i te myelin, he hipoki tiaki e karapoti ana i ngā pūtau io i roto i tō tātou roro. He matū te Myelin e rite ana ki te hinu. Koinei te mea e tiaki ana i ngā neuron i roto i te roro me te taurakira (tō tātou pūnaha io matua). Nō reira, ina ngaro tēnei myelin, ka pakaru te mea mā i roto i te roro.

He aha te tikanga o te ingoa PML?

Nā, kia tirohia te tikanga o ngā reta i roto i te ingoa PML. Mā te mārama ki tēnei ka hoatu he whakaaro whānui ki a koe mō te mate.

• P — Haere whakamua: Ko te tikanga o tēnei kei te kino haere te mate. Ko te tikanga ka piki haere pea ngā tohu i roto i te wā.
• M — Multifocal: Ko te tikanga o tēnei, kāore te mate e pā ki tētahi wāhi o te roro anake, engari he maha ngā wāhi ka pā . He rite ki te mea he whara iti kei roto i ngā wāhi maha o te roro.
• L — Leukoencephalopathy: He ahua uaua te ahua o tēnei kupu, kāore? Ki te whakarāpopototanga, ko tōna tikanga ko te myelin, te mea mā rānei, i roto i te roro, te nuinga o te wā ka pā ki te mate.

Nō reira, ka pā te PML ki te roro. Ka taea e tēnei kino te arahi ki ngā momo raruraru pūnaha io. Hei tauira, te ngoikore o te hinengaro, ngā raruraru tirohanga, me te uaua ki te hikoi. Nā te mea he mate haere tonu te PML, ka kino haere i roto i te wā. Heoi, mō ētahi tāngata, ka taea e te maimoatanga wawe te whakaroa i te haere tonu o te mate.

He aha ngā tohu tuatahi o te PML?

Mō te tini o te tangata, ka tīmata ngā tohu o te PML me te kore e tino kitea. Waihoki, ka rerekē pea ngā tohu i runga i te wāhanga o te roro e pāngia ana e te mate. Whakaarohia he rite ki te mate o tētahi peka o tētahi rākau, ka mutu te mahi a ngā mahi katoa o taua peka.

Ko ngā tohu tuatahi o te PML ka uru pea:

• Te koretake, te kore rānei o te taunga
• Te uaua ki te kōrero, ki te whakaaro rānei
• Te ngoikore o te tinana

I te haere whakamua o te mate, ka pāngia pea koe e ngā tohu pēnei i:

• Te mate wareware, te ngaronga o te mahara
• Ngaronga kōrero
• Ngaronga o te tirohanga
• Ngā huringa whanonga me te tuakiri

Tērā pea ka pāngia ētahi tāngata e te ānini, e te mate haurangi rānei, engari he onge tēnei. Engari, ka kino haere te PML i te roanga o te wā, ā,He maha ngā wā ka mate. Heoi, ka rerekē pea ngā putanga i runga i ngā āhuatanga hauora o te tūroro me te urupare ki te maimoatanga.

He aha ngā take o te PML?

Ko te PML i puta mai i tētahi huaketo e kiia nei ko te huaketo JC (JCV) . Ko te ingoa o te huaketo i ahu mai i te reta tuatahi o te ingoa o te tangata i pangia tuatahitia e te huaketo (John Cunningham). E mōhiotia ana hoki tēnei huaketo ko te human polyomavirus 2.

He mea whakamiharo, tata ki te 85% o ngā pakeke kei roto i ō rātou tinana te huaketo JC. Engari kāore anō kia tino mārama ngā tohunga me pēhea te horapa o te huaketo ki te tangata. He taunakitanga kei reira ka taea e ngā tamariki te pangia e te kai, e te wai rānei. Kua kitea hoki te huaketo i roto i ngā whakamātautau mimi. Nō reira, tera pea ka taea te horapa mā te paru o te mimi ki te waha.

Heoi, ahakoa he maha ngā tāngata kei roto i te tinana te huaketo JC, kāore e kaha te mahi, engari e takoto kau ana. Nō reira, kāore he tohu e puta. Heoi, i roto i te tangata he ngoikore te pūnaha ārai mate, ka taea e tēnei huaketo te kaha te mahi i roto i te tinana ka whanake hei PML. He rite ki te hoariri e moe ana e ara ake ana ka whakaeke i a tātou i te wā e ngoikore ana tātou.

Ko wai te hunga tino mōrearea ki te pangia e tēnei mate?

Ko te PML ka puta noa i te hunga he ngoikore rawa ō rātou pūnaha ārai mate. Tērā pea ka tūpono koe ki te pāngia e tēnei mate mēnā kei a koe tētahi o ēnei āhuatanga e whai ake nei:

• Te mate HIV/AIDS
• Ngā mate pukupuku o te toto me te hinu wheua, hei tauira, te leukemia
• Te mate pukupuku o te pūnaha lymphatic, hei tauira, te lymphoma, te mate Hodgkin rānei
• Ngā mate autoimmune, pērā i te rheumatoid arthritis, te multiple sclerosis (MS), te lupus rānei

Waihoki, ki te mea he kaiwhiwhi okana koe, ā, kei te tango koe i ngā rongoā ārai mate hei ārai i te paopao o tō tinana ki te okana, tera pea ka noho mōrearea koe.

Me pēhea te tautuhi a ngā tākuta i te PML?

Ka tirohia koe e tō tākuta i te tuatahi, ā, ka whakarongo pai ki ō tohumate. Kātahi ka taea e rātou te whakaū i te PML mā te mahi i ētahi whakamātautau hei tirotiro i tō roro me tō taurakira. Me whai whakamātautau pea koe pēnei i ēnei:

• Matawai MRI roro: Ka taea e tēnei te tango pikitia o ngā whara i roto i te mea mā o te roro. He rite ki te kāmera e titiro ana ki roto i te roro.
• Te pokanga tuaiwi/te weronga lumbar: Ko te tango i tētahi tauira iti o tō wai cerebrospinal (CSF), te wai e karapoti ana i tō roro me tō taurakira. Mā tēnei ka taea te tirotiro mō te aroaro o te huaketo JC.
• Ko te koiora roro: He tino onge te mahi i tēnei. Ka mahia anake ina he uaua ki te whakaū i te mate.

Me pēhea te rongoā mō te PML?

Ko te arotahi matua o te rongoā i te PML ko te whakapakari i tō pūnaha ārai mate. Kia maumahara, ka puta ngā mate ina ngoikore ngā parepare o tō tātou tinana. Nō reira, ko te mea nui ko te whakapakari anō i taua parepare.

• Hei tauira, ki te mea kei a koe te AIDS, ka tukuna pea he rongoā ārai huaketo (ART) ki a koe. Ka mahi ēnei rongoā mā te whakaiti i te nui o te HIV i roto i tō tinana. Ka taea e tēnei maimoatanga te āwhina i tō pūnaha ārai mate ki te mahi i tētahi taumata.
• Tērā pea ka whai hua ētahi tāngata i tētahi maimoatanga e kīia nei ko te plasma exchange . Ka tangohia e tēnei maimoatanga ētahi o ngā rongoā ārai mate i roto i ō toto. Ka taea hoki e tēnei maimoatanga te āwhina i tō pūnaha ārai mate ki te whawhai ki te huaketo JC mā te whakanui ake i tana mahi.

Kei te whakamātautau ngā kaipūtaiao i ētahi rongoā hou hei rongoā i te PML. Kua tukuna e te US Food and Drug Administration (FDA) he whakaaetanga motuhake mō ētahi tāngata ki te whakamahi i ēnei rongoā, engari he rerekē ngā hua.

Āhea ahau me toro atu ki te tākuta?

Ki te mōhio koe kei te ngoikore tō pūnaha ārai mate, ā, kei te whakaaro koe kei te puta haere ngā tohu e whakaaro ana koe he hononga pea ki te Progressive Multifocal Leukoencephalopathy (PML), he mea tino nui kia kite tonu koe i te tākuta me te tirotiro i a koe anō.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Ina kite koe i tō tākuta, ka taea e koe te pātai i ēnei pātai:

• He aha te mōrearea o te whakawhanake i te PML?
• He aha te mea ka taea e au te mahi hei whakaiti i tēnei mōrearea?
• He aha ngā tohu e tika ana kia tirohia e au i roto i te PML?
• He aha ngā mōrearea o te tango i ngā rongoā ārai mate?
• He rongoā anō kei reira mō tōku mate?
• He aha ngā mōrearea me ngā painga o ngā maimoatanga o nāianei?

Mā te pātai i ēnei pātai, ka pai ake tō māramatanga ki te mate me tōna maimoatanga.

He aha te roanga o te oranga o te tūroro PML?

He kaupapa tino uaua tēnei ki te kōrero. He mate ahu whakamua te PML. Ko te tikanga ka kino haere ngā tohu i te roanga o te wā. Ko te roanga o te oranga o te tangata whai PML e whakawhirinaki ana ki te kaha o te mate me te maimoatanga e whiwhi ana rātou. I waenga i te 30% me te 50% o te tangata ka mate i roto i ngā marama tuatahi i muri i te tautuhi. Ko te hunga e roa ake ana te ora ka mau tonu ngā tohu, ā, ka kino haere aua tohu. Ka taea e ēnei tohu te arahi ki ngā raruraru nui, pērā i te ngaronga o te kōrero me te ngaronga o te tirohanga.

Heoi, kua whakaatuhia e ngā rangahau hou he tokoiti noa iho ngā tāngata whai PML kua pangia e te HIV ka taea te whakatau i tō rātou mate me te ora roa ake. I mua i te taenga mai o te rongoā antiretroviral (ART) hei rongoā i te mate HIV, 10% noa iho o ngā tāngata whai PML i ora ake i te tau neke atu. Engari i nāianei, me te ART, kua piki ake te reiti oranga kotahi tau ki te 50%. I ētahi wā, ka taea e te ART te āwhina i te pūnaha ārai mate ki te whawhai ki te huaketo JC.

Ka taea te whakaora katoa i te PML?

Ko te hunga e pāngia ana e te PML i a rātou e tango ana i ngā rongoā ārai mate, ka ora pea i muri i te whakamutu i ngā rongoā. Ko te hunga kua angitu te rongoā ki te ART ka ora anō hoki i te PML. Heoi, 80% o te hunga e ora ana i te PML kāore e hoki mai ō rātou tohu. Nā te mea kāore he myelin hou e hangaia i ngā wāhi kua pakaru. He mea noa te kino pūmau o te pūnaha io. Heoi, ka taea e ētahi tāngata te ora tae atu ki te 15 tau i muri i te whakakorenga o te PML.

He aha ngā tumanakohanga mō te hunga e whakawhitihia ana ki te plasma?

Mena i tīmata ō tohumate PML nā te rongoā ārai mate, ka memeha pea ō tohumate ina mutu tō tango i taua rongoā. Ka taea hoki e koe te whakamahi i te whakawhiti plasma hei tango i ētahi o ngā rongoā ārai mate mai i tō tinana. Ko te whāinga o te whakawhiti plasma he whakapakari i tō pūnaha ārai mate. Mō ētahi tāngata, ka taea e te whakawhiti plasma te whakaroa i te whanaketanga o te PML me te whakaroa i te oranga. Heoi, kāore anō kia tino māramahia ngā painga o tēnei.

He tokomaha te hunga ka mau tonu ngā tohu o te PML i muri i te whakamutu i te rongoā, i muri rānei i te whiwhinga i te whakawhiti plasma. Tērā pea ka pāngia ētahi e ngā raruraru pūnaha io. Tērā atu anō hoki ētahi atu mōrearea o te whakamutu i te rongoā. Nō reira, he mea nui kia kōrero koe ki tō tākuta ina whakatau ana koe mō ō rongoā.

Me pēhea taku mōhio mēnā kei te tūpono ahau ki te whakawhanake i te Progressive Multifocal Leukoencephalopathy (PML)?

Mena he mate hauora tōu e ngoikore ai tō pūnaha ārai mate, pātai atu ki tō tākuta mō te mōrearea o te whakawhanake i te PML.

Ka piki ake rānei te mōrearea o te PML i ētahi atu āhuatanga hauora?

Me whakamātautau toto hoki te hunga whai mate pēnei i te multiple sclerosis (MS) me te mate a Crohn hei tirotiro i ngā mate pēnei i te HIV ka whakanui ake i te mōrearea o te mate huaketo JC.

He maha ngā wā ka tohua e ngā tākuta he rongoā e kiia nei ko Natalizumab (Tysabri®) hei rongoā mō te MS, te mate a Crohn rānei. Tērā pea ka piki ake te mōrearea o te whakawhanake i te PML i tēnei rongoā.

Ahakoa kei a koe te huaketo JC kāore i te mahi, ā, kāore he tohu, ka taea pea e koe te tango i te natalizumab. Heoi, he mea nui kia kōrero koe ki tō tākuta mō ngā mōrearea me ngā painga.

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

Ko te Progressive Multifocal Leukoencephalopathy (PML) he mate roro onge e puta mai ana i te whakahohenga anō o te huaketo JC. He maha ngā tāngata kei roto i ō rātou tinana te huaketo JC e takoto ana. Kāore e pā kino ki te hunga kāore i te ngoikore te pūnaha ārai mate.

Mena he ngoikore tō pūnaha ārai mate, he mea nui kia mōhio koe ki ngā tohu o te PML, me te mahi tahi me tō tākuta ki te mahi i tēnā.

Ka kino haere tēnei mate i te roanga o te wā. Heoi anō, kei reira ngā maimoatanga hei āwhina i te whakaroa i te whanaketanga o te mate, hei whakaroa hoki i tō oranga. Nō reira, kaua e mutu te tumanako. Ko te mea nui ko te rapu tohutohu hauora i te wā e taea ai.

PML , Progressive Multifocal Leukoencephalopathy, huaketo JC, mate roro, pūnaha ārai mate, mate neurological, myelin